This blog is to chronicle my family's experiences with the autism spectrum -- it is NOT indicative of any medical or diagnostic truths. There is so much information out there, much of which is presented as facts, when, in truth, they are unproven and contain unsubstantiated pieces of information. I just want everyone to know that this blog is ANECDOTAL and based on ONE FAMILY'S EXPERIENCE; it does not exist to present scientific facts (unless I specify otherwise).

Friday, October 11, 2013

So many things have been happening these last couple of weeks that I've been a bit overwhelmed. There has genuinely been no time to sit down and write here or anywhere else. So, please forgive a very long rambling post, but the time has come to put everything down and get my "publicly available online journal" current. I can't quite say "Up To Date" because I'm sure I'm leaving many important things out, but at least I don't have to worry about telling back stories and can start fresh.

You see, starting fresh is something I always try to do on October 11. As it's my birthday, it gives me that new outlook. This year, my goal is to do a better job organizing my many obligations -- to myself, my family, the organizations that I work with, to my writing(s)....everything. There is no reason why there isn't time to get the things I desire to get done taken care of. The problem is a lack of organization. So, that's what I'm trying to do right now.

But I know you aren't here to read about me rambling on about how I need to get organized. You want to read about my kids and how they are doing.

I'll start with Simon. He has started the same Special Needs Dance Class that I had previously enrolled Rachel in. I'm not allowed to see what happens during the class. I can hear some things through the walls as I wait, I can see some things through a window, but in general I'm in the dark. So, after class, I always try to ask the teacher questions about his performance. And he seems to be enjoying it and doing quite well. But he never wants to do anything with the group. He has a tendency to hide behind a small barrier that is typically where the children place their shoes (they come in wearing ballet shoes and change to tap shoes about halfway through). At his last lesson this past weekend, the teacher told me that Simon is doing everything and demonstrating the skills but he will only do it when he's behind that barrier so he believes that no one is watching.

Simon has also had a few other activities happen these last few weeks. First was a doctor's appointment to Children's Hospital for his regular follow-up. Normally, when we go, I bring the leash (cute animal harness) so he can stay within an arms reach of me when we are walking through any form of parking lot. I do this because he is TERRIFIED of the elevator and any building which contains an elevator. He allowed me to put the harness on and we walked into the building holding hands. He immediately and gently walked to the stairs and into the waiting room. And, at the end of the appointment, he behaved well leaving the building and heading back to the car. I didn't park in the parking garage but on the street so we didn't have a second elevator to avoid, but the improvement since our last visit there 6 months ago is HUGE!!!!! Even the doctor commented on this. When she came into the exam room, we were already there. Simon was reading a book aloud to me about a bus making it's many stops. Every time the bus stopped, someone would get on and / or off. And then, at the end of the page, the book would ask him to find something on that page (sometimes related to the bus story, sometimes not). And every time, he would read this and search for the item on the page. This is the first time that I ever saw him exhibiting reading comprehension in any way other than describing the "Beginning, Middle and End" of a story. And the doctor, who was witnessing this, said she was "tickled pink" to see the progress he is currently making. It was probably Simon's best visit there to date.

Also, Simon had an IEP meeting this week. He is 1 of 3 first graders in his classroom right now along with 5 kindergarteners. The teacher chose to keep these three students because it was believed they would do better with a second year with the structure she provides that is lessened as time goes on. Also, the familiarity would help them and they can be examples to the kids coming into the school. His teacher started the meeting by saying how happy she was that he did stay with her. That because of his familiarity with the classroom (even though there were many changes since last year) and the staff, it made it much easier for him to find his place at the start of the year. Additionally, the staff knew him quite well so that they were able to address issues before they were allowed to become issues. Overall, he is growing in so many ways. They described several social activities that he joins in with, including ones that he enters of his own volition. This is one of my biggest concerns as Simon really does prefer to be isolated from others and really does his best to avoid human contact with almost everyone. His list of people who he likes is VERY small and it's very difficult for him to interact with someone who isn't on his preferred list. But he's been doing much better with this during this school year. He is still having trouble putting concepts together as he is very much a rote learner as well as a splintered learner. But he has demonstrated his deviousness at every opportunity and is happy to go to school. I know he's not there to have fun, but at 6 years old, if going is such a chore, he will never be successful. He genuinely LIKES school (although not as much as his sister) and is finally demonstrating an ability to try new activities (in his own way) under the supervision of his teachers.

Now, onto Rachel. She is also having a great start to the school year. She immediately acclimated to returning to school which was not something I was expecting given past experiences. She has two friends from last year who have joined her in the classroom this year as well as a fellow Daisy from her Girl Scout Troop. She is willing to do all of her work, the aide working with her is able to step back regularly and has reduced the amount of "Good Job"s that she receives. She has demonstrated that she CAN do the work independently and now they are starting to expect this from her. It's not always easy and they have to watch for her becoming overwhelmed when things get to be too much, but that has only happened a handful of times. She is very happy to keep trying her best and is very pleased with the assignments she is bringing home. I am hoping to begin volunteering in the classroom at the start of the second marking period (beginning of next month). Her teacher really wants to make sure that she recognizes that he is the authority figure in the classroom before I make an appearance. As I have been able to come in for observation visits before, I suspect that this will go well once we have one or two visits. But I am working with her teacher so we see the best possible results.

She also had a visit to Children's Hospital for a regular follow-up. She saw the same doctor as Simon and also demonstrated how much she is growing in her development. I read a report that her teacher had emailed to me to the physician so she could hear how she is doing in school (in addition to bringing a copy of her interim school report). Unlike Simon, she was VERY impulsive during this visit, but she was still patient (relatively) and cooperative. She was willing to do whatever the doctor asked of her and demonstrated a HUGE improvement in comprehensive skills testing at least on grade level in all areas (this is a FIRST for either of the twins)! We did discuss some social concerns I have for her. She is complaining often that people are "laughing at me". I've seen her say this at home with regards to her brothers (when they are doing no such thing -- they're not even laughing) so I'm not certain this is the truth. The doctor gave me questions to ask her when she starts saying this of the kids at school, trying to ascertain if this is actually going on so I can determine the best course of action. But I have noticed that she is becoming more socially aware and is really trying to make friends and to be a friend to others. She is also beginning to initiate imaginative play with her dolls and her stuffed animals. I want to encourage these positives, so I have to be careful not to thwart the positives while trying to understand what she is telling me.

So, there is a VERY long "summary" of our lives these last couple of months. Sorry to drop it all in one post, but if I don't you know (as well as I do) that these stories will never be told.

A Little Bit About Me and My Family

Every once in a while, something happens to a family that seems to change everything, whether that change is positive, negative, or in an uncertain direction. One such thing happened to us in March 2009, when we were informed our 26 month old twins (girl/boy) were BOTH on the autism spectrum. Their older brother (nearly 4 at the time) had always been ahead of the curve for most developmental milestones, so we had never really considered that some of the delays the twins were having had anything to do with autism. Well, we were wrong. Since then we have been learning about learning techniques and doing everything we can to make sure they get any and all help they need so that they can live normal lives. This blog chronicles that journey.

If you have all of those things: crust, sauce, cheese, you made an Autism pizza. It might have different toppings, but you can look at it and know it's still a pizza. If your pizza doesn't have sauce, that's Aspergers's. If your pizza is missing more than that but still kind of looks like a pizza, that's PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified)